A Little Bit Can Hurt (10 page)

Bryce's recent allergic reaction was similar to his first and most severe reaction. At the age of 13 months, Kim gave Bryce a few dabs of peanut butter on a wheat cracker for the first time. Kim recalls, "...He ate just one bite...and it wasn't very long, like minutes later, that he had hives and started coughing." Kim says Bryce kept coughing and was crying in a strange, raspy way that, in hindsight, she thinks indicates "his throat was probably closing."

Although she had a neighbor with a food-allergic daughter, Kim admits the thought of Bryce having an allergic reaction didn't cross her mind. Still, she recognized something was terribly wrong. She took Bryce out of his highchair and ran outside to get her husband. They immediately got in the car and began driving to the pediatrician's office. On the way, she called the pediatrician who directed her to the nearest hospital. During the car ride, Bryce continued to cry in that strange, raspy way. They arrived at the hospital where he was successfully treated with Benadryl
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and Zantac
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, although most experts recommend epinephrine for a reaction of this severity. Kim recognizes in hindsight that Bryce's condition might have deteriorated dangerously in the car on the way to the hospital. She says, "We should have called 911, but we didn't think about it."

The following day, Kim took Bryce to the pediatrician. Blood tests suggested wheat and peanut sensitivities that prompted the pediatrician to refer them to an allergist. Initial skin testing at the allergist's office indicated a possible wheat allergy. More thorough evaluation however revealed that Bryce was not allergic to wheat but to peanuts and eggs. Kim recalls, "...Looking back, when he had his first birthday, and different times that he had eaten cake with egg in it, he would get hives...I thought it was heat rash or something...I never knew he was allergic to eggs until he was tested."

When Bryce was first diagnosed, Kim says she felt "denial and a little bit of depression." Now, years later, she confides, "It's frustrating. Sometimes I still feel angry at why we have to deal with it [while] other people's children can go wherever they want and order off a menu, eat whatever they want, go to parties, do anything that we always have to be anxious about... [I'm] not angry at a person, just angry about the situation of having allergies."

Bryce's food allergies have directly affected their lives by decreasing the number of social activities they attend and the variety of restaurants they visit. Although Bryce is older and no longer reaching for others' food like a toddler, Kim still worries about him coming into contact with unsafe food that other children are eating around him. "It just has made things more stressful. I mean whenever we're going anywhere, even if it's to a friend's house or a relative's, we always have to pack up a whole bag of snacks and things to make sure we have safe food." Kim explains that although her extended family is informed and considerate about Bryce's food allergies, it's rare he is able to eat the same meal as everyone else.

When Bryce and his family dine out, his parents speak with the manager or chef to determine which foods are safe. They often frequent the same pizza restaurant because they know and have spoken with the owner numerous times. When trying an unfamiliar restaurant, they bring a meal for Bryce in case they cannot order anything safe. Most often, however, they choose to eat at home. Kim admits, "I get anxious about ordering from somewhere that I haven't been."

Despite her occasional anger, frustration and anxiety about Bryce's food allergies, Kim does see some positive aspects. She explains, "We're much more aware of what we eat...That's a positive." Bryce says the best thing about having food allergies is that "God made me special."

POSSIBLE NEXT STEPS:

1. Have you spoken with your child's teacher about school policies regarding outside food and have you asked how those policies are enforced?
   
2. If your child feels isolated at school because of his food allergy, have you contacted the school to discuss alternative procedures to keep your child safe?
   
3. Do you regularly review the ingredient labels of food products you think are safe, including those foods that are a different size or variety? "Fun size" or "chewy" versions of snacks and candies are sometimes manufactured in separate facilities or have different ingredients. Check the label carefully.
   
4. Has your child experienced vomiting, coughing, crying or a change in voice after eating a particular food? If so, alert your child's physician.
   
5. When dining out, are you aware that states have different laws regulating food allergy training in restaurants? Be sure to speak with the chef or manager about your child's food allergy and inquire about menu options and food preparation.
   

10

JONATHAN

Cruising the High Seas

Like many third graders, Jonathan loves computers and video games. He is active on several sports teams and plays baseball, soccer and basketball. Jonathan is also an accomplished pianist. His mother Nancy describes him as a cheerful guy to which Jonathan laughingly replies, "Sunny nature - most of the time."

J
onathan had his first ambulance ride when he was about four years old after he ate some oatmeal at his grandparents' house. Jonathan is allergic to milk and was unaware that the oatmeal contained milk. He ate a small amount and left the table. His mother Nancy called him back to the table, but he refused to come. She recalls, "Then I went over and looked at him, and his face was starting to swell. He was having a reaction, and I said, 'But there's no milk. There's no milk in the oatmeal, is there?' And then Grandpa said, 'Oh, I just put a little in. I didn't think it would hurt.'"

Nancy administered Jonathan's epinephrine auto-injector and called 911. Jonathan said the needle didn't hurt for long and the ambulance ride was "fun."
He was observed at the hospital and safely discharged. His lifesaving epinephrine had done its job.

Jonathan was diagnosed with multiple food allergies as an infant while Nancy was still breastfeeding him. She explains that Jonathan was an irritable baby who had "continuous rashes." When Jonathan was about three months old, Nancy went to a crab feast and indulged in crab cakes. She recalls the next day Jonathan was bright red all over and covered with a rash. He had always been prone to rashes, but this rash was more extensive and severe. "I took him to the see the pediatrician, and the pediatrician asked, 'Did you eat anything different last night?'"

The pediatrician surmised that Jonathan had food allergies and told Nancy to avoid seafood, eggs, milk and nuts. After following the pediatrician's instructions, she was amazed at the immediate improvement in Jonathan. She recalls, "From being a crying baby [who] was just irritable all the time, he just turned into this happy little thing. It was just amazing, and I could tell if I just tried to cheat and put a little bit of milk in my coffee, it affected him."

After Nancy weaned Jonathan, he underwent formal allergy testing. Confirming his pediatrician's suspicions, Jonathan's results indicated he was allergic to shellfish, nuts, milk and eggs.

Now eight years old, Jonathan attends a private elementary school and eats at a peanut-free table. Children without peanut allergies do eat at Jonathan's table, but their lunches cannot have peanuts, peanut butter or other foods containing peanuts. Jonathan keeps a supply of safe snacks at school and chooses a special snack when celebrating the birthdays of other students. His epinephrine auto-injector is kept in the nurse's office. He reads ingredient labels and avoids areas where people are eating peanuts or foods containing them. Assuming responsibility for his own safety, Jonathan asserts, "I just really keep myself safe."

Jonathan is not alone, however, in keeping himself safe. He has help from the rest of his family. His older brother proudly explains, "I know most of the words for...milk, like 'whey' and stuff like that...Just read the labels, and if we go to a restaurant....always ask." When dining out, his family often brings a safe meal for Jonathan in case he cannot order one from the menu. His family simply explains to the wait staff that Jonathan has multiple food allergies.

Jonathan's family enjoys international travel and does not let his food allergies prevent them from enjoying trips all over the world. One summer, they went on a cruise to Italy, Greece and France to celebrate the fiftieth anniversary of Jonathan's grandparents. Before the cruise, Nancy contacted the cruise line and filled out a questionnaire about Jonathan's dietary restrictions. She then wrote a comprehensive letter that she had translated into Italian, Greek and French. The letter explained Jonathan's food allergies and requested safe alternatives. When Jonathan and his family were traveling in an area where they could not speak the language well, they presented the appropriate letter to the wait staff to ensure a safe meal for Jonathan. On the ship, Jonathan's family dined at the same table every meal and became well acquainted with the waiter who helped Jonathan select safe foods. Every night the chef made Jonathan his own apple pie!

Nancy admits she was worried when Jonathan was first diagnosed. "I was, I guess, more concerned with how to deal with it than anything else because it's obviously something that you can deal with. So I think I looked on the internet and I found FAAN. They had a lot of good information...We got the little cards from them that had the [ingredients] to avoid...That was very, very helpful because at first we didn't know what [those ingredients] were."

Nancy also confesses that Jonathan's food allergies have made her hesitant to send him to sleepaway camp. Despite receiving assurance from the chefs at the camp his older brothers have previously attended, Nancy has decided to delay Jonathan's attendance another year.

Nancy's hope for Jonathan is that he'll outgrow his food allergies, though she has been warned by his allergist that Jonathan is not likely to ever outgrow his nut and shellfish allergies. He is permitted to eat baked foods containing cooked egg protein, but he cannot eat eggs "straight up," such as poached or scrambled eggs, for example. In addition, he can have fish, but not shellfish such as crabs. Nancy says Jonathan hesitates to try new foods. "The problem is that, I think, having avoided it for so many years, he's fearful of it. So it's hard to introduce [new foods] to him."

In addition to his food allergies, Jonathan has asthma. Nancy recounts a hidden danger he encountered with one of his asthma medications. Because of the implementation of a law banning the fluorocarbons found in inhalers, Jonathan's pediatrician switched him to an asthma medication delivered through a powder
disk inhaler. After a year of using this medication, Jonathan's allergist told him the particular medication he had been using contained lactose and potentially a tiny amount of milk protein. Fortunately Jonathan had not suffered any reaction and was safely switched to an oral asthma medication without milk.

Nancy's advice to parents managing a child's multiple food allergies is to educate everyone around the child - family, friends, school staff and of course the child himself. She has taught Jonathan to read ingredient labels and be his own advocate. In addition, she always meets with his new teacher before the school year starts to discuss his food allergies. She finds talking with other parents who fear having Jonathan over for a play date helps to allay their concerns. She always sends safe snacks with Jonathan to play dates. Nancy concludes, "Just do what you can and enjoy life. Try not to let fear hold you back too much."

POSSIBLE NEXT STEPS:

1. Have you checked that non-food items such as medications, vitamins and cosmetic products that your child uses or ingests do not contain any of his food allergens?
   
2. Have you discussed with your physician how to introduce new foods into your child's diet particularly if he has recently outgrown a food allergy?
   
3. Have you emphasized that "a little bit can hurt" to the people who care for your child?
   
4. When preparing to travel, have you contacted the airline or cruise line in advance to communicate your child's food allergies and determine a plan for managing his safety?
   
5. If you are planning to travel to a foreign country, have you considered packing an allergy translation card to help you communicate with hoteliers and restaurateurs in their language? An allergy translation card, which is the size of a credit card, indicates your dietary needs and restrictions including cross-contact concerns. Obtain an allergy translation card for each country in which you will be traveling including layover countries.
   

11

MEGAN

Grandparents' Growing Awareness

 
   
Megan (middle) with sisters.